The retirement Industry has always been good at helping people. In the holiday spirit of sharing and caring, here’s a story about how a sort of “six degrees of separation” group within this tight-knit industry came together recently to help one of its own.
Clint Modler, CFA, has worked in the retirement industry for years, spending much of his career at Oppenheimer Funds in the Denver area, where he served as Director of Retirement Distribution, Western Region, dating back to 2012.
About 9 years ago, Clint was diagnosed with amyotrophic lateral sclerosis (ALS)—also known as Lou Gehrig’s Disease. The progressive neurodegenerative disease affects nerve cells in the brain and spinal cord, leading to a progressive loss of muscle control. There is no cure for ALS yet.
Over time, ALS has robbed Clint of his motor skills to the point where he can only move his eyes. But now for some good news: he’s plateaued and is not deteriorating anymore.
Clint is one of the few people with ALS where the disease has stabilized, and because of this he has qualified to be part of something called the ALS Reversal Program, as he is a good candidate to experience a reversal of this dreaded disease.
Once diagnosed with ALS, it is rare that a patient will recover motor function, but it has happened. ALS Reversals is a program focused on understanding why in some cases ALS progression can stop or even reverse with significant recovery of lost motor skills—ALS Reversal.
As you might expect, the treatment is prohibitively expensive. Even though some of the costs are covered by the government, Clint will be required to pay significant out-of-pocket costs.
When a group of his industry friends and colleagues found out about this, they were quick to step up.
Bill Harmon, who stepped down this past summer as Chief Client Officer at Voya and previously spent 29 years with Great West and Empower, recently relayed the story of how it all came about to 401(k) Specialist.
“It was grassroots. A group of Clint’s friends from the industry were having a beer, eating barbecue at Clint’s house, and then we found that there was a glimmer of hope,” Harmon said. “When we heard this news, our jaws dropped. Well, what do we need to do? How can we help?”
They learned that Modler had been approved for a trial medication called AMX0035 (also known as RELYVRIO), which the Food and Drug Administration approved for the treatment of ALS in September 2022. According to a fact sheet from the ALS Association, AMX0035 is designed to slow disease progression by slowing or preventing motor neuron cell death. Motor neurons are the cells that die in ALS. (Interestingly enough, the ALS Association committed $750,000 to in funding for AMX0035 research and $1.4 million to the NEALS clinical trial consortium to support the phase 2 trial in grants made possible through the “ALS Ice Bucket Challenge” that went viral a couple of years ago).
The problem? Even with the cost of the trial treatment partially covered by the government, there is an $1,800 per month co-pay to receive AMX0035. That’s $21,600 a year, on top of existing costs for round-the-clock care.
“We didn’t even flinch,” Harmon said. He turned to Paula Hendrickson, Senior Vice President, Retirement at NFP who was also among a group of 10 or so industry folks at the barbecue. “She and I looked at each other and said, ‘We could do that.’ We need some type of 501c(3) to go and collect the money, then we can issue it as appropriate.”
Hendrickson also happens to be on the board of a 501c(3) in Denver called The Butterfly Foundation that does exactly these types of things. “Our goal is to help others survive life’s hardships with the help and compassion of their local community,” Hendrickson explained. By going this route, the donations may be tax-deductible and eligible for corporate matching dollars. “We got The Butterfly Foundation involved and just sort of grass-rooted the whole thing.”
Harmon explained, adding that by going this route, the donations may be tax-deductible and eligible for corporate matching dollars. “We got The Butterfly Foundation involved and just sort of grass-rooted the whole thing.”
“This is such a service industry where we take care of others. And now when one of our own really needs the help, let’s come together and do it. And boy did we ever.”
Bill Harmon
The idea for a benefit event was born, and was planned primarily by Harmon, Hendrickson, Eileen Shaw, President, Creative Retirement Plan Consulting, and John Leonard, Senior Vice President – Defined Contribution Practice at PIMCO. It was set as a food and wine pairing on Nov. 15 at the Valley Country Club in suburban Denver.
“During this evening we can visit with our industry friends, taste wine, share good food and stories, and raise the funds Clint needs to participate in this potentially life-changing study,” read the event’s invitation.
“We’ll get all these people from the industry that know Clint,” Harmon said. “We kind of shot for a goal of maybe [funding] 12 months of the medication; call it $21,000, just to see if it works. We thought maybe 30 people would show up, but it was probably closer to 50.”
And instead of $21,000, as of Dec. 12 the cause has raised $38,584.17.
Pretty impressive for a grassroots effort largely consisting of friends Modler has made over the years while working in the retirement business. “I am beyond thrilled at the outpouring of love for Clint,” Hendrickson said.
As the event was going so well, it was natural for the group to think about doing it once a year. After all, a lot of industry folks who found out about the event after the fact via LinkedIn posts from people who attended including noted ERISA attorney and CEO of Pension Resource Institute Jason Roberts said they wished they had known about it because they would have loved to have been there.
“This is such a service industry where we take care of others. And now when one of our own really needs the help, let’s come together and do it. And boy did we ever,” Harmon said. “If we could have a party to celebrate life and then let’s raise money to go and help those in need in the industry, that would be really cool.”
Donations to “Clint’s Cause” can still be made through The Butterfly Foundation by clicking this link: https://lnkd.in/ecjc9Wmq.
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